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That's what I thought. Does sod all for the ringing, but you get much better in filling in questionnaires the way we want you to :banghead:

I am very grateful for this thread. It really resonates with me so much. I had the same realisation recently; the cavalry aren't coming. I am probably not going to get better in my life time. It is so brutal. It is hard not to be consumed with frustration that we could have been in a much...

Hard copy received (after being chased on Thursday!)

Never hurts to ask...?

Yes. Me. I score every morning immediately on waking and record symptoms every night. I recently added to which symptoms I track. I also message the team with any issues I find. I have not paid out for premium though, as I just bought a fitness tracker watch for less than twenty quid on amazon...

Thank you @Adam pwme . Blimey that was a mixed bago_O

@Andy This is massively helpful, thank you very much! :thumbup: I was trying to get to a simple set of instructions, but currently very foggy brain wasn't cooperating:facepalm:

Thank you. Twitter is - understandably - getting a bit concerned about what all this means for the process. Especially that cannot access the consultation and the lack of publicity.

Seriously?! Surely this is something they do fairly regularly? Concerning that working group members are tweeting very publicly about not having had a copy either. All a bit fishy :emoji_fish: after what happened - and is still happening - with NICE

This makes me feel physically sick. What happened to going into medicine to help people? Or learning by 'standing on the shoulders of giants?' The hypocratic oath says "first, do no harm", right? I am thinking doctors should be forced to regularly re take their oath in the same way older...

Can I ask which book? This has already been covered? Thanks! Gez Medinger and Danny Altman covered the ME situation really well in the Long Covid Handbook, which is a very good book. Gez is making a lot of short films on YouTube and talks to a lot of researchers. He might be a good person to...

I wrote to complain about this week's incident. I didn't hear the previous one.

Done. They may regret asking, as I completed while fully PEM and more than a little grumpy "What improvements would you most like to see to the NHS that could improve your quality of life with regard to ME / CFS?" Not sure they were expecting an 8 point bulleted list...:whistle:

Yes! It is really frustrating.

Dare I ask whom, and saying what exactly?

Followed your suggestion and also tagged in Frances Ryan so:emoji_fingers_crossed:

Thanks @ringding I refer back to post #31 on this thread, as I am part of the group working with with Alex Chalk

I've just watched this segment on the BBC. Both were being presented as experts, but were discussing personal experience. Should this not have been made a lot clearer?! The plural of anecdote is not data

An excellent explanation. Better than from some supposed experts...

This is a really good, comprehensive letter. It really needs some good/big press coverage though